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The experience of Colombian boys and young men living with Duchenne muscular dystrophy

A experiência dos meninos e jovens colombianos que vivem com distrofia muscular de Duchenne

L’expérience des garçons et des jeunes hommes colombiens vivant avec dystrophie musculaire de Duchenne

La experiencia de niños y jóvenes colombianos que viven con distrofia muscular de Duchenne

Abstract

Duchenne muscular dystrophy (DMD) is a chronic disease that primarily affects males and is characterized by progressive physical impairment and, eventually, death. This qualitative study aimed to explore and understand the experience of diagnosis and disease in young people with DMD living in Bogotá, Colombia. After securing approval from the Research Ethics Committee (CEI-ABN026-000311), nine individuals took part of a semi-structured interview, and their narratives were analyzed using thematic analysis. The main topics developed throughout the narratives were: negative representation of the disease; fear; difficulty expressing emotions; the patient-doctor relationship; the wheelchair; the caregivers and coping strategies. We conclude that young people affected by DMD face several challenging experiences that underscore the need for better, more respectful, and compassionate interactions with healthcare providers. Also, their experiences are indicative of a socio-cultural context that needs to become more responsive and compassionate towards young people and disability.

Keywords:
Duchenne muscular dystrophy; children; adolescents; psychology; psychosocial aspects

Instituto de Psicologia da Universidade de São Paulo Av. Prof. Mello Moraes, 1721 - Bloco A, sala 202, Cidade Universitária Armando de Salles Oliveira, 05508-900 São Paulo SP - Brazil - São Paulo - SP - Brazil
E-mail: revpsico@usp.br